September 2014
Newsletter

Dear Friends,

“Where is Sainaba’s bystander?”, thus begins Nazeem’s book – a tale of love, care and disillusionment with the medical system.

The author, Nazeem Beegum, is a seasoned print media journalist from Kerala. She has worked with Kala Kaumudi in India, and with Arabia, The Gulf Today and Gulf News in the UAE. “My Mother Did Not Go Bald” is a narrative of the author’s own experiences while caring for and witnessing the death of her mother from cancer. It holds a mirror up to life around hospitals, the often inhuman and detached behaviour that patients and their caregivers have to endure and the helplessness of expatriates who struggle to strike a balance between work and life.

The book was released on 2 September 2014 by Mr Babu Paul IAS, a noted author and thinker who handed over the first copy to Dr M.R.Rajagopal. Mr M.G.Radhakrishnan spoke on the occasion.

We invite you all to Pallium India’s ‘Sangeetha Sandhya 2014’ in Trivandrum on World Palliative Care Day.

Date: 11 October, 2014

Venue: Al-Saj Convention Centre, Kazhakoottam, Thiruvananthapuram

Time : 6.00pm to 9.00pm

Renowned music director and singer, Sri M. Jayachandran and his team of artistes are conducting this event to support Pallium India in its efforts to help the millions of patients and families who are in need of pain relief and palliative care.

Palliative Care Day is a unified day of action to celebrate and support hospice and palliative care and is observed on the second Saturday of October every year, all over the world. The theme for this year’s World Palliative Care Day is ‘Achieving universal coverage of palliative care: Who cares? We do!’

Do visit the event and donate to Pallium India. For more details on the event and how you can support us, please contact Mr Babu Abraham: 9746745502 or write to info@palliumindia.org or walk in to our office at Arumana Hospital, Perunthanni, Trivandrum.

Human Rights Watch will present Dr Rajagopal with the Alison Des Forges Award for Extraordinary Activism, at two dinners in Santa Barbara and Los Angeles. The dinners are an opportunity to inform supporters of Human Rights Watch and others about the “access to pain relief” situation in India, and in particular about the important work that Dr Rajagopal and Pallium India are doing with palliative care. His work over nearly twenty years has contributed to development of India’s National Program in Palliative Care (NPPC) in 2012 and to the Amendment of the Narcotic Drugs and Psychotropic Substances Act of India in 2014.

“Dr Rajagopal is one of the most eloquent and tireless advocates for palliative care I have ever met. His advocacy has given wings to the notion that letting someone suffer from treatable pain is a violation of human rights,” said Mr Diederik Lohman of Human Rights Watch.

The award is named after Dr. Alison Des Forges, senior adviser to Human Rights Watch’s Africa division for almost two decades. Des Forges was the world’s leading expert on Rwanda. Human Rights Watch’s annual award honors her outstanding commitment to, and defense of,human rights. It celebrates the valor of people who put their lives on the line to protect the dignity and rights of others.

In his personal message, Dr. Jinxiang Li expressed admiration for the way in which palliative care has been taken up by the government in Kerala and in India at large, and requested Pallium India’s collaboration and cooperation in further developing palliative care in China.

At this time, we gratefully remember Narotam Sekhsaria Foundation for finding the funds to make the work happen.

We had engaged Edelman for support prior to and during the winter session of the Parliament in December 2013. Unfortunately, there was hardly any business transacted during that session of the Parliament. However, in the extended winter session of the Parliament, the campaign finally met with success with the NDPS Amendment Bill getting passed on 21 February, 2014.

We are very glad that our work with Edelman has attracted a prestigious award in the Public Relations arena. Congratulations, and thank you, Peter Bellini, Amandeep Singh, Priyangshu Dutta and all others at Edelman.

Elisabeth Kubler-Ross’s son Ken Ross and Dianne Gray, the current head of EKR Foundation write to inform that EKR’s books – On Death and Dying, On Grief and Grieving and Life Lessons, were all re-released by Simon and Schuster on August 12. On Death and Dying was first released in 1969!

Dr. Ira Byock wrote the new foreword for On Death and Dying and Maria Shriver graciously wrote the new foreword for On Grief and Grieving.

There were 33 inpatients in the wards of palliative care at West China Fourth Hospital of Sichuan University. Perfectly neat and well appointed, the place had an unquestionably professional look. All patient data were electronic; and the staff – 11 physicians, 24 nurses, a social worker and a driver – looked competent. It was a privilege to go around with Professor Jinxiang Li and team, and what stays uppermost in my mind is the look on Mr Chan’s (not his real name) face, as he looked up from amidst the several tubes and cables that were around him.

Mr Chan was not alone. Many of the patients had multiple channel monitors connected to them, and total parenteral nutrition being given. It is easy to dismiss it all as too high-tech. But if we go deeper, there is food for thought there.

Often, palliative care is seen by patients and families as giving up hope. It should not be that way; but that is the way it turns out to be. What we see too often around us is that the patient is on high-tech aggressive oncology care one day and suddenly the next, he is stripped of it all and sent to passive inactivity as he sees it. The situation is not easy for a patient or family to accept. Should there not be an easier transition as Professor Li provides? If the person has been on aggressive care and desires to continue it, is it reasonable to expect him to give it all up on one day? Would he not need more time? It is unlikely that the busy oncology unit can facilitate the transition.

Maybe, if the palliative care unit is willing to accept the patient with whatever is going on, and then gradually facilitate transition and acceptance, perhaps things would be easier on the patient and on the family?

May be we should appreciate that Professor Li is trying out something new, and see if there are lessons to be learned there.

Thank you, Professor Li, for the privilege of being able to study your palliative care unit. I do hope we will soon see the day when palliative care reaches the whole of China. Best Wishes for that.

Patients or families seeking advice regarding the how and where of it.

Professional and volunteers seeking advice on patient management.

Volunteers or well-wishers desirous of helping the cause.

We request you to spread the word about the Information Centre so that people who need assistance related to palliative care can reach us. For more details, please visit: http://palliumindia.org/info-centre/

It was Pallium India’s privilege to host 46 volunteers from various parts of Kerala for three days from the 19th to 21st of September.

We planned it to be a Training the Trainers session, where some training on facilitating learning was given, followed by some recapitulation of fundamentals and then, people got down to the serious business of supporting End of Life care.

There were numerous problems, we have no doubt, but the experience will help us by planning more effective training programs in future and, the positive energy that the volunteers left behind, will stay in our team for a long time to come.

Please see the article on Prescribing practices for nausea in palliative care published in the Journal of Palliative Medicine. (The whole article is available for free download.) Ref: Timothy H.M., Agar Meera, Yates Patsy, and Currow David C.. Journal of Palliative Medicine. September 2014, 17(9): 1032-1036. doi:10.1089/jpm.2013.0610.

The article shows that for nausea in palliative care, clinicians were widely using metoclopramide as the first line agent (69%), followed by haloperidol(26%). The international data show that Ondansetron was used by an almost non-existent minority; then why is it used so widely in India, especially remembering that it is expensive and constipating, and also that constipation is a very common symptom encountered in palliative care? Do we have any evidence favouring it in the majority of palliative care situations? Is it simply not the power of the healthcare industry in promoting it and we, gullible professionals, swallowing everything meted out to us?

Pallium India was honored to be a participant in HSBC’s annual “Helping Hands Mela”, a week-long event organized in HSBC branches across India to encourage charitable giving through the sale of products designed by NGOs and communities.

The mela began on 22nd September. The event in the Trivandrum branch of HSBC was inaugurated by Mr. Rakesh Kumar Gupta, MD Allianz Cornhill Information Services. Mr. Santanu R, Vice President & Branch Head of HSBC Trivandrum, and the staff of HSBC bank participated in the event. The mela concluded on 27th September.

The Montreal Declaration on Hospice Palliative Care that was presented on September 11 at the plenary session of the 20th International Congress on Palliative Care at Montreal, Canada, calls on the UN to include hospice palliative care in the UN Sustainable Development goals.

Little Stars is a film series about the surprisingly life-affirming stories of young people around the world living with life-limiting illnesses. Against the odds, these children and young people are making the most of every moment thanks to the support of their loved ones, working in harmony with passionate ‘pain and palliative care’ teams.

This DVD (available from mid-2015) will contain a 52 minute documentary feature film narrated by David Suchet CBE (Poirot) as well as a selection of short films telling the extraordinary stories of children living with life-limiting illnesses in the USA, Australia, the UK, South Africa, Italy, Russia, Jordan, Malaysia and India. Includes the Accolade Award-winning short film Value Every Life featuring Joan Marston.

As a part of their Onam celebrations, the staff & students of Akkulam Kendriya Vidyalaya collected Rs.92,200 to support Pallium India’s palliative care patients. In a function on 5th September, 2014, Mr. Vinu V John, News Reader at Asianet, presented the check to Pallium India’s representatives, Mr. Manoj GS, Ms. Aneeja Joseph and Mr. Jayakumar.

We greatly appreciate and thank the initiative of the students and staff of Kendriya Vidyalaya, Akkulam, in helping to reduce the pain burden in our country. Our gratitude is also due to Mr.Jose Mathew, the principal of Kendriya Vidyalaya, Akkulam.

Cancer Aid Society, an NGO having Special Consultative Status with United Nations ECOSOC, working across India since 1987 on Palliative Care, Advocacy, Tobacco Control, Cancer and Non Communicable Diseases Prevention and Control, invites Application/ Nominations from Doctors, Paramedical Staff and Social Workers with demonstrative leadership in the field of Palliative Care for the Cancer Patients from India, Bangladesh, Bhutan, Nepal, Pakistan, Afghanistan and Sri Lanka.

The inauguration of C. K. Bhaskaran Karunya Palliative Care Society was held at Muhama Panchayat near Cherthala, Alappuzha on Sep 3, 2014. The inauguration was done by Sri V. S. Achuthanandan. Mr Babu Abraham attended the event on behalf of Pallium India.

Sri C. K. Bhaskaran, who passed away in July 2014, had been the President of Muhama Panchayat for 12 years. He had played a very important role in initiating the Panchayat-based palliative care in Alappuzha. The society aims to impart training in palliative care, ensure medical facilities for the financially-challenged, launch an ambulance service, and establish a health laboratory.

We wish C.K. Bhaskaran Karunya Palliative Care Society every success in bringing effective palliative care to the needy in and around Alappuzha.
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In response to the Supreme Court’s call for a debate on the issue, IAPC has proclaimed its unambiguous stand on euthanasia:

The Indian Association of Palliative Care opposes euthanasia in all its forms. Good symptom control through palliative care can pre-empt the request for euthanasia. Withholding or withdrawing treatment that is medically futile does not amount to euthanasia.

Two qualified and experienced nurses in the field of palliative care are required for home care operations.

Qualification: B.Sc Nursing(NCI recognised) / GNM(RNC Registered)

Age: Max 45 yrs.

Salary : At par with Industry.

Location: Nagpur, Maharashtra

If interested, please send resume to snehaanchal@gmail.com or call 09823123490.

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PARTING SHOT

This will relieve pain in the West. Will it cause more pain in India?

Amazing discoveries are happening every day in the field of pain management. Despite all scientific advances, it is very difficult for us to treat movement-related pain, especially in conditions like various kinds of arthritis. See this news, which describes one such advance: New technique enables targeted, controlled delivery of pain meds.

We fear the pain that scientific advances like this cause in India.

Most innovations like this carry with them the cost of the research as well as the enormous profit (usually 50 times the cost of production) that the industry seems to need. The average person, when given an advice by a doctor, sees it as a prescription to cure. Families get destroyed by the cost of treatment. It is seldom the practice in India to explain to the person in detail what exactly the new innovation is going to achieve and the downside of it all.

It is essential to have some kind of ethical guidelines before innovations are offered to patients, often destroying families in the process.

Disclaimer: Information provided by Pallium India has been collected from different sources and though every effort has been made to ensure that it is up-to-date, its accuracy cannot be assured. Pallium India shall have no liability for any damages, loss, injury, or liability whatsoever suffered as a result of reliance on the information provided.